It seems that every cause has a designated day or month to raise awareness for that individual ailment. Well, September is upon us, and it is designated as IIH Awareness Month. Thirty days to recognize those diagnosed with idiopathic intracranial hypertension and their journey towards recovery. Like many of you, this campaign did not mean anything to me in the years past, and I had never even heard of IIH. Times have changed, and in March of 2025, I found myself becoming an expert through my own diagnosis of this rare disease. IIH is not something you are at risk of dying from, but it is something you are challenged to live with. From headaches to tinnitus and nausea to loss of vision, those managing IIH need to stay on top of their health to maintain a high quality of life.
Let’s talk a bit about what IIH is and who it is likely to affect
Idiopathic intracranial hypertension is defined exactly as it reads. Idiopathic means there is no specific reason why you may have this problem. Intracranial translates to in your head. Hypertension refers to high pressure caused by fluid retention.
Essentially, your body has produced an excess of cerebrospinal fluid that is now trapped between your skull and brain rather than draining properly through the sinus veins and back into your circulatory system. You may now be asking yourself why this happens. Well, that takes us back to the first “I”; we have no idea. So how is this treated, and what are the effects of the disease?
First, let’s understand who this disease affects
The literature shows that only a few percent at most of those affected are men. Cases of IIH are predominantly seen in women ages 19-24 who are significantly overweight. For those who know me, I don’t self-identify as any of those categories. I am a 51-year-old man (49 at diagnosis) who is physically fit and very active. I am an avid cyclist, hiker, and skier, and I spend five to six days a week in the gym. Needless to say, I was quite surprised by my diagnosis.
My symptoms started with a loss of peripheral vision in my right eye, and within five days, I was looking through pinholes in both my eyes even as my visual acuity remained sharp. By the time I saw the ophthalmologist, I was contending with an unbearable headache, profuse sweating, and persistent nausea. A digital scan revealed significant swelling in both optic nerves.
The doctor shared the troubling news that I was suffering from either brain swelling or a brain tumor and coordinated an immediate transfer to the hospital. My mom died of a brain tumor at 54 years old, so I was convinced of my own fate. I had no hope or optimism and was unable to care for my most basic needs. I was willing myself to die.
After nearly three weeks and two hospitals, I learned that I did not have a brain tumor and that this middle-aged, athletic male was diagnosed with a young, heavy girl’s disease. It took me some time to process that too. Over the two weeks, I transitioned from certain and hopeful death to an optimist who had reframed his situation, going from why did this happen to me to why did this happen for me.
I was very lucky. I was diagnosed early. I was able to be seen by a leading neuro-ophthalmologist in one of the world’s preeminent IIH facilities (Hospital at the University of Pennsylvania). I was then operated on by the world’s leading neurovascular surgeon for the required procedure. I had every opportunity to effectively treat my disease and the related symptoms.
While we will never know what caused the increase in CSF production that led to my diagnosis, we did learn why the buildup could not resolve itself. My transverse sinus veins are anything but equal; specifically, the left side does 10 percent of the drainage while the right does 90 percent. The right was found to have a significant stenosis causing a near-complete blockage. The intervention was to stent the right side and straighten the stenosis to open up the drain.
The fix was instant; the symptoms began an immediate reversal, and after 72 hours I was stabilized. The vision in my left eye went back to 100 percent, my right eye 77 percent, and all other symptoms were resolved. I am certainly very fortunate.
However, the stent was not the only intervention. Dr. Mary Seligman argues in Flourish (2011) that therapeutic interventions constitute only one component of recovery; optimism and positive orientation are equally as important. I was determined to get back to 100 percent. Back to biking, hiking, skiing, and living a fulfilled and good life.
I had hope and optimism, a solid support system, and a documented set of achievements toward my recovery goals. I used many positive psychology interventions to get there. From gratitude and grit to finding meaning and being my best possible self at every stage of recovery. In the end, it was optimism that healed my mind, body, and soul.
We will all encounter hard moments in our lives, and a health crisis may represent the most demanding test of a person’s whole self. I tell my children that we are equipped to do hard things and that they need to see themselves as victors rather than victims. By staying focused and putting one foot in front of the other with intention and purpose, we can always find our way forward. Viktor Frankl wrote (1959/2006), “He who has a why to live for can bear almost any how.” He went on to say, “When we are no longer able to change a situation, we are challenged to change ourselves.” This is what the fight for well-being looks like.
So as we recognize IIH this September, let’s honor those who live as victors and have found strength through their adversity, while finding ways to lift up those who are still in search of meaning and their own well-being. Stay resilient and earn your badge every day!
